Welcome to my Page
Inspired by the past, motivated by the present, hopeful for the future!
My granddaughter is a CF carrier. It is a genetic disease and passed recessively. Delaney does not have CF, but her mother, Stephanie, does. As CFers attain longer lifespans and lead lives that include children of their own, the population of known carriers will grow. I am not worried about this growth, because it is the result of the great advances in research. Research that is supported by the Cystic Fibrosis Foundation. I have hope that these advances will continue as rapidly as they have in the past and a cure will be found in my granddaughter's lifetime. Or maybe her mother’s! (Hint! Hint! This is where you can help.)
As an in-law to a CFer, my understanding of the struggles and the treatments isn’t what it could be. Nor do I feel like the entire story is mine to tell; therefore, my details are just that….mine. I will leave the other details to Alex and Steph, who are also on the team.
My daughter-in-law was very private about her treatments and challenges, but in 2019 all of that changed. The year started off normally enough with the added excitement of Stephanie’s pregnancy. Steph had always been a fairly healthy CFer, but complications seemed to grow as my granddaughter grew inside her. Steph felt huge at her baby shower in late February. While I could see that while her belly was growing, the rest of Stephanie seemed to be shrinking. I watched Steph power through the shower. Steph was hospitalized the following day. She was released after a few days and then hospitalized again after a few days at home.
My first (and favorite!) grandDAUGHTER, Delaney Grace Stroh, was born on March 7...five weeks early. Steph struggled with an infection and Delaney ended up being released before her mom. Bittersweet for me…I was somehow trusted to care for the baby! My son, Alex, stayed at the hospital with his wife, Stephanie, 99% of the time. Stephanie was released about 10 days after Delaney, but it didn't last. I remained in their home to care for the baby. She was home for 30 hours then ended up back in the hospital with CO2 poisoning. Apparently, Steph was inhaling fine, but exhaling nothing. She was basically poisoned by her own breath. Alex carried her out of the house at 1 am and rushed her to the hospital. She nearly died. I ended up staying with the baby for a total of three weeks before Delaney’s parents came home.
Steph became a lung transplant candidate during that last hospital visit, but she wanted to try to improve her lung functionality and regain her strength instead. While Alex and Stephanie put all of their energy into Steph’s recovery, I remained in their house to help with Delaney. I was truly learning the struggles and challenges of a CFer firsthand. After 10 days at home, Steph had a doctor's appointment and her lung function had further declined. 18% function! The next day they readmitted her. Steph was given a transplant score (68) and was listed in the national registry. Her parents began helping with the baby through the day; I could return to work. (My vacation balance was negative!) I spent all of my off hours with Delaney.
After a mere five days on the transplant list, Steph received new lungs. Five days is nothing and the first set being good-to-go is pretty special, too. Our teammates, Joe and Lois McBryan can share more about that. Steph recovered remarkably well and was home just 10 days after her double lung transplant. I am proud to say that Little Miss Delaney , at nine weeks old, was sleeping through the night upon her mommy’s return. This “granny nanny’s” job was done and I am just plain ol’ Granny! Both of them are doing well and I look with hope to their continued long lives...pedalling until CF stands for Cure Found!!!